Early and accurate diagnosis
MECFA donates diagnostic equipment and testing supplies and establishes agreements with the Ministry of Health (MoH) and hospital administrations to continue to offer free diagnostic services, maintain the donated equipment and budget for testing supplies. We also continue to enroll hospitals participating in our diagnostics program in an ongoing research study of the CF epidemiology in MECFA member countries. This program is a partnership with Prof. Milan Macek (Charles University, Prague, Czech Republic) and is funded by Vertex Pharmaceuticals.
Training clinicians and allied health professionals
Through a successful pilot program, MECFA has optimized on a method to train hospital pulmonologists and allied health professionals to establish CF care teams and develop CF Centers following US CF Standards of Care. This process includes partnering with the CF Foundation’s Centers of Excellence and the local health ministries, hospital administration and pulmonology departments. The method was developed in collaboration with the CF Foundation using quality improvement training that translates to directly impacting patients’ BMI, lung function and overall health status.
MECFA established the MaMi Project, a pilot feasibility program collaboration between the Marmara CF Center (Istanbul) and the Mott CF Center (Michigan) aimed to implement US-standard, multi-disciplinary CF Center in Istanbul, Turkey. This project established a care center able to manage all clinical aspects of patients with CF, following best evidence-based care guidelines and adapting them to the Turkish setting. MaMi trained a multidisciplinary expert CF Team based in Turkey under direct and continuous supervision of the University of Michigan (UM) CF Center, and the CF Foundation.
Access to Essential drugs and care
Cystic Fibrosis (CF) is a rare underdiagnosed life threatening disease that leaves thousands of patients in developing countries with few options for survival beyond adolescence. The main barrier to patients thriving in developing countries is access to essential CF drugs and equipment to manage the disease. Governments do not recognize CF and patients care is not included under state health systems. Often basic drugs such as enzymes and Dnaze are not available and/or too expensive for families to afford. A primary program for MECFA is advocating on behalf of patients encouraging Health Ministries to provide basic therapies and support the development of CF Centers.
MECFA has donated 10 Iontophoresis units, 10 sweat chloride analyzers, and supplies for 10,000 tests to hospitals in Egypt, Jordan, Sudan, Azerbaijan, and Ethiopia. All hospitals and CF teams enrolled in this program are currently participating in diagnostic training being led by Dr. Susanna McColley funded by the CF Foundation. In 2023 MECFA will donate diagnostic systems and testing supplies to Tunisia in collaboration with the Ministry of Health, World Health Organization and 3 state funded hospitals.
We are grateful to the Cystic Fibrosis Foundation for their continued support of the MECFA Diagnostic Program.
MECFA's pilot program (MaMi) focused on quality improvement (QI) projects, including: improving BMI, improving pulmonary function testing, and implementing Infection Prevention and Control (IP&C) in the center. Marmara CF Center is now qualified to train clinicians and allied health teams in Turkey and surrounding countries following the MaMi projects principles. Within the first year of the program, pwCF treated at the Marmara CF Center saw significant improvement in their health outcomes*.
The MaMi program provided a successful methodology that MECFA are currently implementing between the following institutions.
Boston Children’s Hospital and Brigham and Women’s Hospital (BCH/BWH) CF Center in Boston, Harvard Medical School, USA and King Abdullah University Hospital in Jordan.
University of MI, Mott CF Center, USA and the Aim Shams University Hospitals in Egypt
Marmara CF Center, Turkey and Bechir Hamza Children’s Hospital in Tunis, Tunisia
Marmara CF Center, Turkey and 2 hospitals in Azerbaijan.
In 2022 MECFA launched the MECFA Access Program (MAP), a pilot member program aimed at providing a short list of essential Cystic Fibrosis (CF) therapies at a substantially reduced price for developing countries in the MENA and Central Asia region. This pilot program is being tested in Jordan in 2023. Visit MAP to learn more.
MECFA, with the support of strategic partners, has successfully advocated in Jordan, and Azerbaijan gaining patients access to a short list of essential CF drugs . In addition Health Ministries in these countries are supporting the development of CF centers and specialized CF teams.
In 2023 MECFA will work with Prof. Samya Nasr and the CF Center at Aim Shams Hospital in Egypt advocating for patients access to therapies.